Kellysavedbygrace

Thx for sharing. I am grateful there are docs and researchers actively working on this.

Hi M, I'm curious as to what, if anything, you think triggered your second outburst? And how are your symptoms similar or different? I suspect I have MCAS and have an appt on Monday in Charleston to see Dr. Afrin, a well known hematologist who specializes in MCAD (you may have heard of him on this forum.). Anyway, I don't know of the relationship between Magnesium supplements and/or Clonazepam to MCAD. I can tell you, however, that I am on both and find both to be slightly helpful. (I would not describe it as "strong symptom improvement." I have also stopped taking BBs bc they were not helpful and causing side effects. It sounds like you might want to change your primary care doc. It is so important to have a good one who is willing to study and learn more about your condition with you. I found a primary doc who also runs a research clinic- mostly pharmaceutical trials- who is not too swamped w a large Pt load and loves research. I'm his only POTS patient and he is willing to review info and work w out of town docs. I'm even able to get IV saline administered in his office as needed.

Funny blog. You go girl!,,

My primary care doc who is a D.O. suggested I consider doing the complete nutritional panel after I asked him about micronutrient deficiencies. He told me this is not the type of test that is recommended by most practicing docs (MDs /DOs) but because of my condition and our lack of helpful treatments he was up for writing the script. We knew I was already Vit D deficient and despite the fact that I've also been supplementing w a multivitamin I was surprised to be deficient in so many areas. Interesting that I am deficient in 5 out of the 7 micronutrients- Antioxidants like SongCanary. It is also interesting that I have lots of antioxidants in my diet so the deficiency in theses is a surprise. Also, looks like most of these play a role in the transfer of energy (ATP) at the cellular level.

I just received the results of a complete nutritional panel done through Spectracell Laboratories. This micronutirnet analysis (WBC) showed I was deficient in 8 micronutrients, listed below. I wonder if others have experience with this type of micronutrient testing and if anyone else is deficient in similar micronutrients. (I recall KimBell has at least one of these listed on her profile.). Some of these I've never even heard of. Would love any insight you might have about any of these micronutrients and how they might or might not be at play in autonomic dysfunction. Vitamin B3 Glutathione Folate Coenzyme Q-10 Biotin. (interesting bc I have been on a Biotin supplement for the last 2 MOS bc of hair loss) Selenium Asparagine Vitamin E

That is awesome! You are a beautiful bride. I wish you love and blessings in your new marriage. This past weekend I thought of you (after reading your post last week) as my husband and I were involved in leading our church Married Adventure Club retreat. I got 2 ltrs of saline before the event and during the event I felt really good. At about noon on sat the fog started rolling in and by 7pm I was crying in bed with horrible symptoms -migraine, palipitations, short of breath and intense trembling of my whole body. Any normal person would have gone to ER and I just kept telling myself, "this is POtS". You'll be ok. After a full day in bed Sunday I am back to baseline. I think somehow our adrenaline pushes us through when we need to "be on.". But then our sympathetic system kicks in and won't stop. And that huge pump of adrenaline just doesn't have a normal "shut off" button. Wonder if your post wedding day experience was similar and if others have experienced similar crashes.

Like a few earlier mentioned, it depends. If it is someone who I don't know well it is usually, "ok.". If it is someone who is close to me I tell them "hanging in there on most days" and "terrible- with you I just want to be real and honest.". If I'm having a good day (not often). I let everyone know, "im doing great today.". I agree with what E said, most people ask as a part of the standard greeting so each person expresses a bit of their unique personality in their response. Before I got sick my answer to this was always, "doin great.". So anyone who knows me will recognize I'm not Myself. If they care enough to ask more I will tell them what is going on but I always try to share at least one way I am blessed even with this condition - like, spending more time at home with my family and being at home when they get back from school.

Issie, I read your response and cried. I know you are right but I'm struggling to accept it. I keep pulling my hair back in a ponytail and the width of it keeps shrinking. I used to not be able to use this one barrette because it wouldn't hold all my hair. Now that one doesn't even stay in because there is not enough hair. I'm not at the stage of needing a wig yet. Yet. Good words of wisdom. I will reread your post many times. TY

I started noticing my hair falling out several months back. (March)- about 6 MOS after I became sick, about 3 MOS after starting Fludrocortisone. I consulted w my PC dr he suggested it might also be the beta blocker I was on. At the time I was already wanting to getoff Cymbalta (for sex drive related side effects). So I slowly tapered off all 3 in April and by May was off them. The hair loss seemed to get better (a little bit- but still more loss than normal.). Then in July, a flare had me in the ER and the dr gave me a steroid pack- 7 days of prednisone. Within a week my hair loss doubled- I went in to see my beautician and she tried to hide it from me but I could see her crying as she swept my hair away after every brush. I have not been back bc I'm not sure what to do. I normally color my hair but I think the chemicals are too harsh and will destroy what hair I have remaining. Like many others, I'm fortunate to have thick hair to start with, but now it is thinning and damaged. I have worn it long and want to keep it long if at all possible. It does not look healthy like it did last year. I've started washing only with natural products- no sulfates, glycerin, etc. But my hair looks horrible. I'd love any ideas, suggestions.

Both of mine were done by EP cardiologists. One locally and one at Cleveland Clinic. I know the doc has to be trained in administering a TTT and some administer slightly differently. For instance I wouldn't have been able to get the Catecholomine draw locally and here I was given a ltr of saline before the test, up there I as not given saline. The catecholomines are hormones that are also neurotransmitters- epinephrine, norepinepherine and dopamine are the three that first come to mind. They catalyze effects within the nervous system and if there are abnormalities you want to know about it. This Can tell the doctor if you have a hyperadrenergic form of POTS which is thought to be more rare but changes the pharmacological treatment protocol slightly. I am by no means an expert on catecholemines but you can search this forum for previous posts which may hep. Also, feel free to PM me.

Right now in the US I'm seeing 3 docs who are consistently putting out research. There are often lots of other docs listed but these 3 tend to be involved: Dr. David Robertson, MD - Vanderbilt. (also lead author on the Primer of the Autonomic Nervous System, Medical textbook.) Dr. Phillip Low, MD. - Mayo, MN. (I was told at Cleveland Clinic he is also known as the "father of POTS" as he coined the name) Dr. Juillian Stewart, MD - NYU. There are many on this forum more knowledgable than me so I hope they'll add their input too.

Funny, I can be at 150 walking into the gym. (because of POTS erratic craziness). Get on the recumbent bike, get pumping really hard and my HR will drop into the 120s-130s. When doing cardio I get all sorts of erratic HRs (180-not recordable weird rhythms) up until I'm manually pumpingmy legs and working my cardio in the 120s-140s. And on a good workout day I like to stay in this range between 20-40 mins (not sure ow that translates to watts). My overriding goal is to strengthen my heart muscle and hopeully that will help w overall vascular tone. If I really get going over 150 I quickly tone it down not so much because of palpitations but overall exercise intolerance. That is not to say I'm not symptomatic while exercising. When recumbent I typically don't get more faint and often the blood pumping will help clear my head but anything upright or sitting w legs down is danger for me in the faint category. I often get grey outs/ tunnel vision etc but only when feet are down. I wonder what would happen if you pushed through into the 120s-130s and kept it there for 10-15 mins- would the palpitations go away for you like they do for me?

Yes, good points B.And I sure dont need extra calories.

Maia, yes. Before the root canal I had no symptoms. The root canal itself appeared to be fine. The first symptom appeared the next day- tingling and numbness (parasthesia) on the same side of my face as the dental work. the next day I had it on the other side of my face. The next day it was in my right foot, then up my leg, then my left foot, etc. It slowly moved up my body until a month later I had bilateral parasthesias, palpitations, pre syncope, and seizure like attacks that landed me in the hospital. Funny, that was Sept 26, 2011. Anyway, I was Dx w POTS and NMS in November and have been disabled since. In July I had a filling done and had a complete relapse of the parasthesias leading to a big POTS flare. That dental work was done with a different local anesthetic w/o epinepherine. We do think ther is some correlation to the trigeminal nerve as my parasthesia on that side of the face correlates w all 3 branches of that nerve. As I type this I still have parasthesias in my face (mild) and wonder what would happen if I have that tooth removed and replaced w an implant. My dentist, Endodontist and another dentist who gave a second opinion all think the dental work was a "trigger" but not the "cause.". I have thought about reaching out to some of the leading dental schools to share my case because it is unusual. I have also wondered it ai wasn't having some sort of delayed systemic toxic reaction following the local. I wish I knew but when I saw you have an infected tooth it raises the red flag for me. There are plenty of Dysautonomia pts who have had symptoms following dental work/abscessed teeth.

Like you, I can be very symptomatic w/o a correlation of HR and BP changes. (most docs don't get this.) I too started exercising - first w cardiac rehab and now w an exercise therapist. Ive come a long way (now 5x wk) but still most of my exercise is recumbent and if I do anything upright I have to be either marching/ or running hard- otherwise I get dizzy. Back in March when I started my HR was more erratic, now it is erratic all day long except once I'm 10 mins into my workout- then I'm like a textbook HR. Sometimes during cooldown Ill focus on my HR just for the joy of watching my HR act normally. Of course once I stop all bets are off. Often I can feel the blood draining my head on the way home from workout. So even though my HR is textbook during ex that doesn't match symptoms. I can push through a workout and have tunnel vision the whole time. Lately I've been more symptomatic than the last few MOS and I wonder if it is because I've upped my exercise. Exercising harder is something to be cautious about. When I push myself I regret it. Many people have exercise intolerance and we are likely to make our conditions worse by overwork. I try to not let my HR go above 150. I keep a close eye on it and slow it down when I get in that range. As far as "normal" for POTS- I don't know of many "normals." I would stop any standing warm ups/ cool downs. Sit, lie down, ask the cardiac rehab nurses to help you find ways to do it in a recumbent position. I agree w your doc, bc symptoms don't match HR/BP meds that influence the heart probably won't help- that said, if Midodrine is not working and you've never tried a BB then it makes sense to try it even if just to evaluate it's effectiveness for you. And yes, I definitely experience symptoms at rest- in fact some of the worst are while resting. Maybe updated testing would be helpful especially ifit has been a while. They might find new information that would help.

That was supposed to be "stinking" not "sit king"--- LOL

Hi Puppy. I'm so sorry to hear you are going through this. I can only imagine how frustrated you must feel. And I just went to your profile and learned that your mom is fighting a battle too. What a challenge you are facing. I wish I could takeit away for you. Actually I wish I could take away this sit king horrible condition for all of us- now we're talking. Here are a couple thoughts I try to consider/keep in mind for my peace of mind during this ridiculously horrible and crazy condition: - this is a season, and seasons change. It won't be like this forever. - focus not, "one day at a time" or "one hour at a time," but "one minute at a a time.". (stay in this moment) - don't worry about tomorrow because today has enough worries of its own On another topic, here is a link to something I read Sunday. (this new site was just mentioned today on this forum). http://dysautonomiai...page.php?ID=106 Anyway, this talks about workplace accommodations according to the ADA- which is a federal act that is enforced in all states and should also apply in school. Take this with medical documentation to your counselor and tell them that it is your right to receive reasonable accommodations. If the counselor doesn't listen go up the chain of command. His/her supervisor, principal, the superintendent of schools if you have to. As far as your progress in school- it reminds me of Pam's (Hippychic) post earlier this week. I think we all have lost dreams and I'm sorry. What I do know is you are one smart cookie. I've learned a lot from you this year in your posts and I'm thankful that you share your wisdom with us. You are a blessing to me and I will be praying for your wisdom in how to proceed with classes. 2 yrs, 4 yrs, 10yrs- Although it is the loss of a dream, it's just a piece of paper and it does not define who you are. And even though we've never met in person, I know you to be one of the sharpest most encouraging young ladies I've met.

I just started using about a month ago. I use it as a natural moisturizer on my lips and skin and cook w it and eat it plain. (in small amounts). I read about it helping in Alzheimers patients and decided it can't hurt. Plus I Love the smell of it. When I use lots ofit I seem to feel a little improvement.

Z, If I'm in your shoes I'm changing docs. A TTT is the gold standard for Dx POTS. If she has such Orthostatic issues it is important to get a measure of both HR and BP min by min when assuming upright position not using her leg muscles. (for us our legs are often "our second heart"- quoting a fellow dinet forum member) Docs who have not been properly trained or practiced will tell you, "it doesn't matter because the treatment is the same- Fludrocortisone, salt and water- maybe even Midodrine." The reality is there is no known cause or cure. In some mild Dysautonomia cases the above treatment may be enough, but if your daughter is embarking on a long term condition the data would be very helpful both now and in the future. With POTS, knowledge is power. Any doc who discourages a TTT at this juncture should be fired. As a side note, the doc is probably right that it is a sinus tachy but assuming that without testing (ie: holter monitor as Lemons mentioned) is bad practice. Assuming it is a sinus rhythm does not allow for the clinical evidence that his/her assumption is correct. The last time I checked the scientific method the scientist first makes a hypothesis, then tests it. Good clinical data is critical.

What happened with the tooth? Was it abscessed? Did you have dental work? Is there infection still present? I have not had expeience w antibiotics helping but had sudden onset following a root canal of an abscessed tooth and a relapse following other dental work.

Funny, I stumbled on this site Sunday. Wonder how long it has been up. I was thinking of printing up the Dysautonomia brochure and taking it around to as many primary care docs as will listen and make it a personal campaign to spread the word in the Tampa Bay area of FL. Truth be told, I don't have the energy to do this now but maybe I could make it a really long term goal.

I weaned off twice- once in Feb for a 2 wk drug holiday, and then again in May- this time permanently. I'm quite sure I was losing my hair bc of it (although it may be a combination of drugs.). Now I'm on very few because I've developed pretty severe reactions to most chemicals/ meds. When I did it I slowly decreased my dose over a two week period. In both instances I had no withdrawal effects.

I get small tremors (shaking hands arms etc) when I am overly symptomatic. It is usually following a stressful situation. Very different from what you are talking about. I've been a Pt at Cleveland Clinic and think it would be a fabulous place to go next - I'd suggest scheduling an autonomic and neuromuscular workup. I'd recommend Dr. Jaeger

Certainly if you can get more info about the mechanism behind your case that would help both you and the docs in exploring treatments that seem to work with that subtype. And, like Kim I too am so tired of docs and spent a hlf hour crying in the parking lot of my last specialist visit bc I'm so frustrated that he was not willing to even try to help me. This condition can make you feel so alone- and most of the docs don't sympathize. That said, I'm still fighting to figure out what can help me feel better- I'm just not counting that the docs to do it. So here's my game plan: - Continue following w my team of 4 local docs. (primary, caridio, neuro & sleep) - continue following w my out of town autonomic specialist. (8.5 HR drive / 3x yr) - continue getting IV therapy as a "bailout" and for prevention before stressful events - continue to research possible mechanisms that are effecting me - find docs to help me rule out things I suspect. (for instance I'm headed to Charleston in 2 wks to see Dr. Afrin to rule out MCAS) - go to Vandy to participate in research. (application in- waiting to schedule)- the reason is not only to aid in research but specifically work w the leading US researchers on Autonomic dysfunction to gain their insight about the mechanics behind my POTS. (is NET deficiency an issue? Is this truly hyperadrenergic w severe pooling? To I have Renin- Aldosterone issues, etc) - continue my salt/ fluid loading and exercise plan (adapted Dr Levine protocol) - if I'm not feeling better after the heat of summer is gone (still 90s here), consider a chest port with at home multi day saline drip. For your case I'd suggest you not go back to Mayo but perhaps go somewhere else where they will most likely have different equipment, testing procedures, etc. The likelihood you'll learn something helpful and new from another autonomic center is greater than going back to a place you've already been. Have you had a serum Catecholemine draw on tilt? I've been to CLeveland Clinic and it was very helpful. I know from that visit I have severe blood pooling but since I want more information I'm planning to go to other locations for better insight. A side note, I've only had this thing for 1 year, but it has been a terrible year and I'm still fighting for answers and better treatment plans. I know many who have been down this road and are exhausted from the fight and a ready for a break from the craziness. My sister-in law has been fighting with docs for the last 13 yrs to find better answers and she has recently chosen to stop going to docs and stop w the testing. I totally support her decision and am glad she gets a little bit of peace. Rare conditions like these are like being on a roller coaster ride of ups and downs and unexpected adrenal surges that really mess w life.

Since Social Security is a federally administered program I would think it wouldn't matter too much, that said, I'm not sure if the state has any involvement in operations. I do hope this means it is becoming more widely recognized as a real disability. Jen, what do you mean you were approved through Met Life? Is that a different type of disability program?